Ibrance (Palbociclib)
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I am not brand new here but I only post from time to time. If I am feeling OK, I suppose I go into denial about all of this and I just try to think about my plants, garden, cooking, organizing my small little house and dumb everyday things like that. Then something really scares me (planning a big trip, a whole other anxiety) and I am back here looking for people who know what this is like. I am on time released narcotics as well and have thought about tapering off but haven't. I had a bout of leg pain even with the meds and did proton radiation back in February. My pallative care doc is great at explaining stuff and she told me that the mets can damage the bone so that the pain continue even if the mets have shrunk. I finally decided to just live on my meds and stop trying to be big about it. We are all different and yet, the same here. my therapist tried to remind me to have compassion toward ourselves.
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Sorella - What your palliative doc said makes sense to me. When I was younger, I broke my foot falling down a flight of stairs. I had a concussion too. Anyway, my point is that even after the cast came off and the bone was completely healed it ached for probably a good year. The bone may have healed but it's not “good as new". I liken my bone pains to that - the lesions may be inactive but the bone will never be the same - but my pains are mild and sporadic. I only occasionally treat with Ibuprofen.
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Chicagoan - Thank you for your concern. I'll ask my MO what he thinks. I believe mine are sclerotic too, but I could be wrong.
Sorella and RK - I think that's a good explanation of what the pain might be as well. I would guess, maybe, with as many lesions as I apparently have that the bones are just going to hurt as they (hopefully!) slowly heal. I asked my MO once if the lesions would heal and turn back to bone. He said that "Boney lesions where breast cancer has been don't necessarily resolve back to normal bone typically but they can kind of scar down and resemble bone again, slowly over time." Don't know what that's worth. It's helpful to know others have similar issues and we can commiserate.
I appreciate everyone's input. I'll definitely mention it to my MO this week to see if he has any thoughts on it. And palliative care offered me a sooner face-to-face than my monthly check in. I declined but maybe I will ask if she still has availability. Thanks!
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My husband was a pharmacist, and he will be the first one to tell you how amazing opioids are. They get a bad rap, but they really are miracles for those in pain. Don't be afraid to take them just because they're narcotics. They're doing what they're meant to do.
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Katy blu definitely take what you need. That was great that you tried to taper off. Does the medication make you groggy or tired? I have been able to use alternative medicine right now but keep a heavy duty prescription available just in case. I use acupuncture and MM and meloxicam right now but I have gabapentin and oxy. Both of them leave me groggy and hung over the following day so I use as needed. I have bone mets but also arthritis. I'm also receiving steroid injections and doing physical therapy to strengthen my back so hopefully that will help as well.
I hope everyone is doing well with their ibrance these days.
Tanya
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Tanya, I am able to function normally on morphine and gabapentin. Though I did have to work up to my current dose of gabapentin because it does make me groggy. I started very small on the liquid version and over 6 months moved from 50 mgs to 300 mgs. I do pretty good with that now, plus I take it at night. The morphine is the lowest dose available and doesn't make me groggy. I used to work out several times a week but recent joint pain had me taking a break. I am slowly trying to get back into that.
I hope everyone is doing okay!
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Hi All, Katyblu - I am sorry you have daily pain. Definitely, I agree you should take pain meds to control it, if that is what it takes.
Tanya - keep us posted on the P/T and steroid injections that are helping you with pain (along with pain meds).
I had a great vacation, visited Cape Cod which is directly across the country from where I live. It is beautiful and we spent time with friends that live there, so that was fun too. The wife has had breast cancer and is a nurse for a surgical oncologist so I feel very comfortable with this couple and don't feel the need to "explain" or hide anything.
I came home last Wednesday and work has been nuts (which was expected). I have my quarterly petscan on Wednesday 9/14 and will take any and all pocket duty energy while I wait. I received a message from my cancer center that I have been assigned to a new oncologist. The message was from the new to me oncologist's nurse. She was the nurse for my original oncologist back in 2008 (that oncologist retired in 2015) and she mentioned in the message "not sure if you remember me, I was your clinic nurse when you were first treated". For some reason, that made me cry. Of course I remember her but I really wish I wasn't back here, as this cancer stage IV stuff sucks. I will meet my new oncologist on Monday 9/19 to review my petscan (which I will receive via MyChart hopefully the day after the scan). My busy work schedule is helping me not have too much anxiety but you all know how it is!
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April girl you’re so savvy to stay busy. This dx messes with your mind sometimes. Happy you enjoyed cape cod. The best time I ever went there was as a child. My grandparents took us. Beautiful place on earth. Pocket for your Wednesday appt.
Tany
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Aprilgirl, I'll be thinking of you tomorrow and hoping you get results soon. For me, the wait for results is the worst part of any testing, from blood tests to MRI's.0
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Aprilgirl1, in your pocket.
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Aprilgirl - In your pocket. I’ll be the one eating peanut M&Ms. Hugs.
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Aprilgirl, in your pocket! I can totally empathize with work helping to stave off the anxiety. I think that's the main reason I keep going to work, even when I am not feeling well. But I'll be with you for your scans, eating some salt water taffy! I'm sorry about the circle back to your original treatment, that can be rough. But I hope your new oncologist is great and the nurse takes wonderful care of you!
I hope everyone is doing well today. I've been feeling a little off since Friday but I'm trying to fight through it. Happy thoughts to all!
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Hi everyone. I was in Yosemite for four days with my college girlfriends. We had a blast!
It looks like I missed a lot, but I'm trying to catch up. Katyblu, I'm sorry about your pain. I agree that your pain is yours alone and that if you need the meds, then TAKE THEM! You don't get any extra points for toughing it out!
Aprilgirl, I'll jump in your pocket, too!
Since I can't remember the rest of the posts, I'll just wave to the group. My last scans were stable and I saw my MO yesterday. Ibrance seems to be still working, even with the ANC drop, but we're going to continue with the 100 mg dose. I'm thankful.
Since I can't remember the rest of the posts, I'll wave to the group.
Wishing everyone a week as empty of SEs as possible.
Carol
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Aprilgirl, definitely in your pocket for scans, sending you lot of love and a few chuckles even, while you're getting scanned, as in, "well, isn't THIS hilarious, here I am again". Love that you had a good trip recently, sorry that work sounds really crazy busy!
Sunshine, great news on stable scans!
Katyblu, I agree with what others have said, if you need pain meds please take them.
I haven't been posting as much, still here though, still on 75mg Ibrance, still getting shots of lupron in my bum monthly, still having hot flashes aka episodes (they are not gone in a flash, they tend to linger...). Went through all my books and donated about 300 of them, getting a new bookcase later this week. We ordered new windows for our house several months ago, and they are finally ready to install, so trying to schedule that, as well as have other work done in the yard - it all seems to happen at once, doesn't it?
Love to everyone here ❤️
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Hi, everyone -- I haven't posted in while, but I have been reading and supporting you in spirit. The discussion about what sclerotic means is helpful, since my sternum met is described that way.
Katyblu, others have offered good advice on the pain meds. I'll just ditto their response.
Aprilgirl, I'm jumping in your pocket too for tomorrow. Here's to good scans!
I just complete round 12 of Ibrance -- I remember how anxious I was a year ago. Now it's my new normal. I'm on 100 mg but my new oncologist brought up dropping to 75 at my last appointment. It would help my WBC numbers, I'm sure, although I seem to function pretty well on the current dose.
I've been doing well enough that next week we leave on a 2 week trip to France. It was planned for September 2021 but my MBC diagnosis last summer plus a COVID spike led us to postpone. But we have to gather our rosebuds while we may -- so I'm gathering!
Love and support to you all.
Ann
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aprilgirl, it's getting crowded in your pocket, but I'm in here, too! Wishing you love and luck!!!
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Hi all, thank you all for the pocket duty! I wore my lucky socks (wonder woman motif), had my favorite music playing (foo fighters) and MyChart results show that the petscan and Ct Scan are both all clear:) So relieved. I know you all understand. I meet my new oncologist on Monday for the official review and fulvestrant injection but it sure gives me a skip in my step to know that today, it's all ok. Weirdly, I saw a client in the waiting area for those of us getting scans. I saw his wife (she is also my client I guess) exit the petscan/ct scan area right before they called me back. We were all wearing masks. She didn't notice me. He noticed me,before she came out of the scan area. He caught my eye and said my name (tentatively) right after I checked in. I sure hope they received good news.
AnnTop, congrats on 1 year on Ibrance. My onc. lowered me to 75 mg Ibrance in January of 2021 due to low WBC and so far I haven''t had my wbc or neutrophils go too low on 75 mg so my doctor is happy. I am so excited for you to go on your trip! Gather those rosebuds! This is the biggest lesson I am trying to embrace in this journey. Absolutely we need to make hay while the sun shines so to speak.
Sending you all my love and support and I appreciate yours:)
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hi everyone, I have a question about taking or holding ibrance while on antibiotics? I have to take antibiotics because of an infection spotted between my tooth root and jaw- what I don’t want now. Do you have experience being off ibrance because of taking antibiotics?
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I had a UTI recently and took antibiotics. There was no mention of holding off on the Ibrance. I didn't think to ask.
Carol
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thanks Sunshine for answering my question. In a condition that might be a progression I scare if I don’t take ibrance. I hope uti problem all resolved now.
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Hello All!
I have been a member since 2009 but my old login is not working hence the new username and no dx details. I'll get that sorted out ASAP.
I hope you don't mind me jumping on here but I need some help and it seems like you have a lot of combined experience with metastases and Ibrance.
First off I want to say that I consider myself lucky to still be here. I'm followed very closely by my oncologists and I have PET scans every 6-9 months.
But I've just been diagnosed for the 4th time with BC and this time it's again in my sternum.
First diagnosed in 2009, mastectomy to left breast, chemo and radiation and follow up with Tamoxifen. 2013 met found in my right femur more radiation and switch to Arimidex (brand name only generic filler side effects were horrible).
In 2019 met found in my sternum more low dose radiation and added Faslodex injections. There was some discussion of switching Arimidex for Ibrance but decided to continue with Arimidex and save Ibrance for later.
Well, now it's later.
I held off initially because of the side effects but now I'm faced with the option of high-dose radiation to my sternum again (same spot as before but smaller) and/or switching to Ibrance finally. Don't know why it's come back except dr said low dose radiation didn't eradicate all of the cells from before even though PET scans were coming back NED after radiation.
My oncologists (radiation & medical) have been great but I really wish one of them would just tell me what to do instead of just giving me all the side effects (Ibrance side effects are scary) and radiation risk info (fracture to the sternum, pain meds, bone necrosis) and letting ME make the decision. I didn't go to med school and I feel like maybe I made the wrong decision 3 years ago when I opted for low-dose radiation and holding off on Ibrance???
Any advice would be greatly appreciated.
Marie
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Marie-I have been on Ibrance for 6 years and have never had terrible side effects. I had mild ones for about 3 months and now very few. I am sometimes fatigued but I don't know if it is due to Letrozole, Ibrance or cancer. If you are concerned, I would suggest getting a second medical opinion to help you make your decision. Best wishes-I hope you find something that keeps the cancer at bay for a long time. Getting three more years out of Arimidex doesn't sound like a bad decision at all.
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mkirkwood - You deferred taking Ibrance, it's been 3 years since you had any progression and you feel you made the wrong decision? You got 3 years on minimal meds. I'd say you made a pretty darn good call!
It's hard for me to advise you as my cancer is much more wide spread and aggressive. I got 19 cycles out of Ibrance/Fulvestrant but I had to hit a single spot of progression with radiation at 11 months. Fortunately I was able to squeeze out another 8 cycles before all hell broke loose.I personally like discussing options and their pros/cons and then choosing but if that makes you uneasy, it's time to have a sit down with your doctor and ask what they would do if they were you. I know it's kind of hard to do in this case because you are likely consulting both a medical oncologist and a radiology oncologist but I would talk to the one that seems most open to pursuing solutions outside of their expertise.
My experience on Ibrance was that I had to quickly lower my dose. My MO lowered my dose after only 14 days due to low ANC that took another 14 days to recover. Lowering the dose had the added benefit of alleviating the other SE I was experiencing. My ANC still could not tolerate that dose. I could not successfully complete a 21/7 cycle until I was put on the lowest dose. Life was great for awhile but eventually fatigue set in. I also tried Ibrance's cousin Verzenio. The diarrhea was moderate but the stomach cramping was off the charts. I progressed quickly on V so I never got to a point where the SE lessen (some women do well once their body adjusts and they learn their triggers). I've never tried Kisqali but they recently reported an increase in overall survival (OS).
Good luck with your decision. Whatever you decide, do it with the confidence of a 4 year old in a Superman costume. No woulda, coulda, shoulda. You have no way to know if the path not taken would have been better. All you can do is make a decision based on medical facts and sound advice. Then keep moving forward. I'd be interested to hear what path you take. Hugs.
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Hi Marie, sorry you are here with us. I will confirm what Chicagoan and RK2020 shared about their experience on Ibrance. I have been on Ibrance for 34 months (started 11/2019) so almost 3 years. Although I have had to reduce dosage twice due to low ANC or white blood cells, I have not had any significant side effects. I did lose some hair but it's not that noticeable to most people and it started to grow back once I was lowered to 75 mg Ibrance which I have been since January of 2021.
If you met me you would not realize I am a stage IV cancer patient on the scary medication you see advertised on TV. Even when my anc is low I don' t "feel" bad. It is just not good to have our white blood cells that low. I have some fatigue but it isn't overwhelming. I work full-time and worked throughout Covid. I travel a fair amount (safely, wearing an N95 mask at airports and on flights) and consciously am trying to enjoy the time I have right now because I don't know how long I can stay on Ibrance and fulvestrant. I don't know what will be next. It is scary.
The hardest part of this MBC for me is to not get too far ahead with worry. I was terrified about side effects, how long will Ibrance work, what would come next etc. I consciously strive to work on the facts I have today and not go too deep with my fears. I have plenty. However, the fears are all like a wild and twisted flow chart with way too many questions that I can't answer today.
RK2020 - I love the confidence of a superhero comment ! I wear Wonder Woman socks to my quarterly scans. We have to go bold and not look back. We can only make decisions on the info we have. It is always ok to get a second opinion, too like Chicagoan suggested.
Hang in there! Let us know what you decide. We are here to support each other and no one understands our predicament like those sharing in this disease.
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Thanks so much for your quick replies and messages of support! I really do appreciate it.
aprilgirl1 - I too work full time (thru COVID too) and do not look like I am a cancer patient undergoing treatment. There are a lot of us battling this disease that are lucky to be in remission and able to carry on with a high quality of life while undergoing treatment. People are always surprised to learn that I have to take medication every day, go every 4 weeks for my Faslodex injections and scans yearly (6-9 months). I too sometimes forget that I'm stage IV. That is until the scans are reviewed or the blood tests start to rise and the bad news comes.
Chicagoan - I am hoping that if I go the Ibrance route that my side effects will be minimal like yours! Thanks for the feedback and sharing your experience.
rk2020 - It's not that I don't like to hear the options and side effects and risks I just don't feel that in the state of shock of yet another dx that it's up to me to make the decision for my care. But I would like to think that if I was making a truly wrong decision the drs would advise me against it. I like your analogy and my motto has always been "don't worry until you have something to worry about".
Thanks to all of you for helping me understand that although I deferred Ibrance it was a risk I took and I did get 3 years of minimal meds and a good quality of life for that time.
I hope to speak to the clinical pharmacist soon about Ibrance and make a decision after speaking to my Med Onc this week.
I'll be back to check in and hopefully get my login (with profile pic and details) sorted out too!
Hugs to all!
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hi all! Snowdrop and sunshine sorry about having to take antibiotics. It's good to know it's ok. I see new sternum people. Mkirkwood, I am de novo oligometastatic, so Drs went all out on me. I've done both ibrance (before mastectomy) and radiation (after) and back on Ibrance now. My ANC goes way too low, so now i am on 75 for 18 days 10 days off. I'll go off again for a few months for reconstruction (DIEP if scans next month show its ok ,I'm scared but doing it anyway) ANYHOO. I find the Ibrance fatigue much worse than the radiation (7 weeks) fatigue was. Part of the fatigue is the weakness i get towards the end of the cycle when I feel I am fighting off something. Its a bit better now with the new schedule. That said, I am still working my physical job, and most people don't notice a thing. (Just don't look at my apt!!! Too tired to clean, lol.)
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Yay Aprilgirl! I'm glad everything looks good on your scans. I hope your new oncologist is good to work with.
Mkirkwood - I have been on Ibrance for one year. So far I have had a great response to it. I made it 9 cycles on 125mg and now I am on the 100mg. It has done a wonder for my ANC levels. I do have side effects, but who knows if it's the Ibrance, the Arimidex, or the cancer itself. I mainly have fatigue (mitigated by some generic ritalin) and joint pain, but throw in some nausea and headaches and some hair loss, weight gain. But for the most part I live a relatively normal life and don't look like a cancer patient. I am active duty military and still work daily, though I have a desk job and usually only work 6 hours a day. I was maintaining a workout schedule until the beginning of August when I took time off due to severe joint pain. I am trying to work on that and hopefully will start working out again soon. These ladies have already offered you some great advice and personal stories so there's not much I can add. But the fact that you are already asking questions bodes well for future decisions. You are doing the best with the information you have and that's all each of us can ask of ourselves. Never beat yourself up! We are always here to support one another and to bounce questions off of each other. I'm sorry you are here, but welcome to the group!
As for the rest of you ladies..... I am in constant awe of all the things y'all do day in and day out. Sometimes I feel like I am being dramatic or whiny about how I feel, probably due to my military indoctrination lol. Do any of you have days where if one thing goes wrong in the morning, the rest of your day is thrown off? Like for instances, one day while I was getting ready for work I did some things out of order at home and then promptly forgot my uniform top until I got to work (which was a 45 minute commute). When I realized it as I was getting out of my car, I had a full anxiety attack and could not go into work that day. Everything was scrapped and I went home and tried to get myself together. I think part of it is I am putting a lot of stress on myself to be me prior to diagnosis and haven't figured out who I am since dx. I am wondering what everyone's thoughts are on working and/or retirement. And if you are not working, what kinds of things do you do every day? I have about 18 months left until retirement but I'm wondering at times if I am going to make it. I think my commute factors into my fatigue and sometimes I just feel overwhelmed at work. My bosses have been very understanding but it is very frustrating for me to not be as productive and reliable as I used to be because some days I just can not. So any thoughts y'all have are always greatly appreciated. Thanks!
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Katy-I can relate in part to your situation. I sometimes try to be the "old me" and really overdo things and then pay a price. I'm trying hard to accept the new me-to push myself only to reasonable levels and be happy with what I can do today. But there are days I get frustrated with myself that I can't do things I could do at age 35-so ridiculous of me.
As far as retirement, I think your situation is really tricky. Being military-if you can hold out until your official retirement if might be for the best in terms of your income and benefits for the rest of your life. My situation was different. When I investigated my benefits, I learned that I could go on disability until my retirement which is 65 and so I did. I have been very fortunate and not working has been good for me because I can get plenty of rest and have the time to exercise and eat well. The reduction in stress was also life giving. I suggest you investigate your benefits thoroughly before making any decision and just cut yourself some slack in terms of expectations if it is best for you to keep working. I just remember that GumDoctor got pretty well screwed by the military when she was no longer able to work so if you can avoid that, please do. Obviously only you know what is best for you.
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Katy, I never had a career, just low paying part-time jobs; my husband has a good full time job. So I worked several years after diagnosis but the job requirements kept changing and were more physical so I chose to stop. Most people I know who retire say they don't know how they got anything done while working because they're so busy after they quit. Not working allowed me to get our finances in better order, I tackled some home improvement projects and tried all kinds of new hobbies: coin collecting, learning the harmonica, genealogy, line dancing, etc. I also did some traveling, not always big trips but also finding places of interest locally within a three hour radius from where I live. Lots to explore: botanical gardens, Amish country, flee markets, shopping malls, new restaurants, even visited the prison where Shawshank Redemption was filmed. We get a pool pass, it is two minutes away, and go all summer long. I need an equal balance of being with people and having alone time, so I also do quieter things like read, watch TV, work in my flower garden, etc.
That said, eighteen months can go pretty quickly. One philosophy is to try to only give 80% at work. Don't give them your all. And a motto I love is “work smarter, not harder." Look for ways to make things easier on yourself and do it without guilt. My son works for a company and one of their slogans is “less is more." I remind myself of that often and I no longer try to cover so many bases. Honestly, less really is more. If the work commute is an issue, look for ways to make it a bit more tolerable, either find good music to listen to, or podcasts, or treat yourself to a good cup of coffee as you head out, anything to try and make it less stressful. I find deep breathing exercises helps with anxiety. I will hold my breath 20 seconds three times in a row and do that a few times a day.
Lastly, pamper yourself whenever you can, again without guilt. Whether that means sleeping in, getting your hair done, taking a hot bath, ordering take out instead of cooking, buying yourself something nice, etc. Maybe one or more of these ideas may work for you, or spark some of your own ways to approach your situation.
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I know I’m blathering on and on, but I wanted to say I admire you for going home from work the day you got all flustered. You were listening to yourself and knew that the best thing to do was to remove yourself from the stressful situation and come back fresh the next day. I think it was actually a smart move on your part. Who hasn’t had those kinds of meltdowns? It’s times like those where we can especially practice kindness towards ourselves.
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